About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, February 27, 2011

Continuing ..... Well, since Mark has left my hospital room, now knowing that I'm ok and survivied that epsisode - he headed back to the hotel to get some sleep. Bless his heart, I know how hard all this is for him as well! I know I've got a keeper that won't let me down! Mark still surprises me with how much love and support he always shows me!

Of course now I'm not in any mood to go to sleep - well, I'm exhausted but I worry about a repeat performance of my last show! Got back in bed with my Nook, read a bit, slept a bit and this is when I was up until 5:30 a.m. watching "Up In the Air"! Got through the night and knew that in the morning I wanted to take a shower. Usually, my hair is matted with blood from the embolization, but not this time! I didn't feel well enough to shower and get a fresh gown on, so I just tried resting, and told the nurse I would shower in the morning before leaving.

The following morning, I was being good and letting Mark sleep in @ the hotel - we both knew Dr. Yakes P.A. Amanda, would be stopping by my hospital room anywhere between 9:30 a.m. and 10:15 a.m. - when Mark walked in, holding 2 cups of coffee from Starbucks! This is my "treat" after having an embolization each time we go to CO! While enjoying our coffee, we got a visit from a local Chaplain that goes by P.J. - stopped by my room to offer some spiritual support! I told P.J. how lucky I am to have so many friends and family that support me in love and prayer!

This is now 3/1/11 and because of the past few days that I will l blog about - I had to take a break from writing. I needed to rest, regroup and I'm bored with my situation already, ha, ha!

The story continues ... we have a late flight, like 5:30 pm., but had just enough time to repack @ the hotel, go grab a bite to eat @ Ted's Montana Grill, where we got to visit w/our buddy Michelle - she is a super friendly waitress w/a huge heart that we have gotten to know! Michelle is always asking if there is anything she can offer us - a ride to the airport, a place to stay, anything! She is a doll! She never wants us to pay for our lunch either (but we alway sneak money on the table!) - after lunch and visiting w/Michelle, we headed to the car rental return. Got that taken care of and got on our flight to Dallas! Home, here we come! Or so we thought! We arrive in Dallas, TX w/plenty of time to board our continuing flight home to Corpus Christi - only to find that after sitting on the plane for over 30 minutes, were told to deplane, as there was no pilot to fly us home! NO WAY! I just wanted to get home to my own bed! I want to cry and be home already!! Before we had even boarded the plane, I had called our friends Jon/Felice in Dallas, since she had left me a voicemail concerned about this trip I had taken to CO for an emergency embolization! I had gotten no answer, and hoped to reach her soon. I never did try calling her again, because by the time we were given the bad news of being stuck another night in Dallas, it was too late to call anyone but family! The airline "booked" us into a Holiday Inn that had only ONE VAN to get us all to the hotel! Luckily, Mark got us one the first one that took off! We were able to get our luggage - but no dinner, even though we were given vouchers for breakfast the next day @ IHOP - which we heard were not honored! What was bothering me, was that I wanted my mist cup over my trache in order to get a good night's sleep and where is that? Oh yeah, at home! The first flight out in the morning would leave like 5 or 6 a.m. and I wanted to go for that! Mark wanted to at least get some sleep and possibly breakfast, so we opted for the 8 am flight. Ended up we got a few hours sleep, no breakfast and paid for a taxi ride in a Lincoln to the tune of $50! Finally got home on Wed. @ 9:30 a.m.! Whew! Got some rest, went and got a shorter haircut so I can zip in and out of the shower faster and prepared to go to work the next day!

Oh! Before I forget - part of the trama/drama of this, was that my babies were being taken care of by my dear friend Sylvia and her husband Randy and I wanted to see my kids! Sylvia was willing to drive them to the airport to us when we thought we were arriving before midnight, but as you now know, things didn't work out that way! Come to find - Sylvia was nice enough to sacrafice her lunch hour and meet us @ her house to pick up our kids on Wednesday. Sylvia had asked before whether our babies were "diggers" as far as being outside, but truthfully, we told her Hanz and Bella don't spend enough time outside for us to know that! Yet ... who do you think the troublemaker here was? Anybody, anybody ...? Sylvia says she got home one day and was calling out for Bella - only to find she had dug her way out of the back yard and down the street!!!! From what I understand, a neighbor was already bringing Bella back - OMG!!! Sylvia said she was thinking, "Oh no! They'll never let me watch their dog again"! In my mind I'm thinking, "You mean you're even considering watching our dogs again? Of course Hanz was a complete angel! He's mommies angel! Sylvia could not get over what a sweetie our Hanzie is! He takes after his mother, ha, ha!

Ok, so on to the next day - reported to work on Thursday, and was doing ok - met Mark for lunch and he had just asked how I was holding up. I had just told him that as long as I wouldn't bleed @ work, that I should be ok. I looked down to take a bite of the chips/beans we had just been served and guess what? I was bleeding. Made a run for the bathroom and Mark had the waitress checking on me a few minutes later. Meanwhile, blood is coming out my mouth and I'm getting globs of coagulated blood that I'm trying to pull out because I don't want to gag! Mark stepped into the bathroom and grabbed a roll of paper towels and was handing them to me to spit the blood in! He ended up having to ask for a plunger as I filled that bathroom sink up with blood! We had to empty that out twice - and somewhere in between, Mark called Celia to come help! Mark had an all day meeting @ work, and Celia took me back to my job after the bleeding stopped, so I could go get my cart full of meds and things! I took the rest of the day and the next off and headed home! Celia told me to rest and she started trying to clean up our place by washing dishes. Well, I had to pull @ one of the coagulated clumps that was still hanging on, and here comes another sink full of blood! OMG! I had just been given 2 units of blood in Colorado! Poor Celia, I hated her to witness what I was going through - it was awful! By this point Celia decided it was time to go to the emergency room! We live like 3 blocks away from a hospital, so we headed that way after calling my primary care physician. We wanted to get the quickest lab results for my blood count to see if I would need more blood or whether I would be ok, even though I had lost quite an amount! Celia said I was looking pale and I was feeling dizzy. Got to the ER, called Mark of course and finally told Mom, since we hadn't wanted to worry her. They all took turns waiting with me as we tried to find out what to do next. Their final answer was to be admitted to the hospital. No Way! I told them I had just gotten out of the hospital in CO, and if I needed blood, I could get it on an outpatient basis! I did not want to miss more work and since my blood count was not crucially low, I was allowed to go home and promised to come back if I had any more bleeding. Why is this happening @ this point? This avm is a monster that is alive! I feel I should be past this point by now! Of course I did not sleep well, w/the fear of impending doom!

I don't even know where I'm @ now - except that if I just don't bleed from my nose or inside my mouth, I will be ok! Spoke w/one of Dr. Yakes P.A.'s and asked why this was happening?! Well, her obvious answer was, "because you have an avm"! I just feel that by now, enough arteries would have been closed that these "bleeds" would not be happening!

I've decided to start listening to my body and not my mind. I'm trying to get some rest when it's time to rest and not try and stay up @ all hours trying to read all night or watch all my shows! I am trying to lead a normal life and nothing about my life is normal right now! The last couple of days, I have shut my Nook early and slept. I have ironed my clothes early and slept and given in to the meds! I'm done forcing myself to be Wonderwoman - just can't!

Had a little bit of a bleed @ work this moring - scary! Lasted about a minute, but enough to shake me up a little! Came home for lunch, just wanted a little egg taco and to lay down a bit, and Mark got a phone call as we were finishing lunch. A good friend passed away - the man that taught Mark the last of his carpentry skills, Mr. Joe Spencer passed away last night. Whew! Talk about a shake up! I went back to work, but came home an hour later. Between the minor bleed in the morning and what we heard happened with Joe - I could not function @ work today. Oh, and a choir friend had passed away a few days prior as well. Let us all love one another, live for today and don't take anyone/anything for granted! Love to all!

Cyndi

I may tweak this here and there - but that last photo is of Amanda and I in CO when she came by my room to sign my discharge papers! She called yesterday to see how I was doing. Said she told Dr. Yakes what had happened w/my bleeds, and he felt he was targeting those areas! Just want this avm gone so I can live each day to fullest! Gotta get some rest!

Friday, February 25, 2011

Greetings to all! You're going to be hearing a lot from me the next few days! I really want all of you to know where your prayers are going and why I need all of you so much! I appreciate you coming along for the ride! Let's see ..... I woke up in recovery @ Swedish Medical Center in Englewood, CO on Monday, mid-day ~ had a very nice nurse that was attentive. I opened my eyes and started looking around and tried to assess my situation. Closed my eyes and started praying Hail Mary's and Our Fathers and tried to be still and rest. Ever since getting my trache - as horrid an experience as that was - my waking up in recovery has been easier and less of a trauma for me. Of course I was told I could not bend my right leg, as Dr. Yakes had done a groin stick for an arteriogram. After a bit, it was finally time to be put in a room and I remember wondering where Mark was. He's usually so good about being right there when I open my eyes! Apparently he wasn't told until a little later that I was awake and ready to be put taken to a room. Anyway, I vaguely remember the male nurse on duty that helped switch me over from the OR bed to the hospital bed in my room. So I was moved to the hospital bed and was left alone in the room. I happened to look over toward my right, and saw that my IV had come loose near the back of my hand/wrist area and blood was flowing all over my hand and on to the floor! I press the Nurse button on the bed and a cheery voice says, "Hi! Can I help you"? I just whispered, "help". Had a couple nurses come by quickly and take care of the situation and shortly afterwards, Mark showed up! What a relief! Course next thing I know, the nurses and Mark are joking around and I hate to spoil the fun - but I had to put an end to that! I remember telling Mark, "excuse me, but I'm tryng to get my bearings here - can all of you keep it down"?! Yikes! I never know how good or bad I'm going to feel after an embolization - and my main concern on being @ Swedish this time was getting the bleeds I had been having under control!

Didn't have much of an appetite, so I knew I would be ordering a light dinner of something like cream of wheat, juices and yogurt! Mark left after a bit since I was sleeping most of the time, to run out for a pizza. He watched Alice in Wonderland courtesy of the free movies the hospital offers! Later, I watched Up in the Air starring George Clooney and Ana Kendrick from Twilight! We both watched Iron Man 2 before leaving in the morning! Can you tell we don't get out much?

Don't remember whether this was before or after dinner, but once I put the little button top over my trache, I had to get some good hacking out of the way and guess what happened then? Yup, a bleed! At least I was in the best place possible! I was trying to remember where that was coming from and luckily Mark had already had dinner and all, so he was able to help me out a lot! I was bending over the trash can and trying to pull some of the coagulated blood clots from inside my mouth - which is tough to do, since I can't open my mouth very wide! I know you are not supposed to pull those out until they are ready, but they were making me gag! Since I remember having a bad bleed a couple years ago while in San Antonio visiting my cousin Art and his wife Grace, I ended up in the emergency room and the ER doctor got a couple of those long q-tips and used them to pull out a long, glob of coagulated blood and it must have been ready to be pulled, because no more bleeding happened after that. Anyway, back to the scene @ hand .... I was coughing and needed to take in a lung full of air, but didn't want to suck in those blood clots either - yuck! Thankfully, the nurse came in while all this was happening and it didn't last much longer. I know I was thinking something along the line of - what the heck is going on?! Stop the insanity already! Got back in bed, Mark stayed with me until about 11 p.m. before going back to the hotel to and got some much needed rest!

Here is a photo of nurse Becky Bowman and I -she had taken care of me before. She is very sweet, attentive and professional! Always has time for a kind word and to visit and share stories! Thanks for all your help Becky! Earlier, one of the ladies in Housekeeping came in to empty the trash and she recognized me from being a patient! Said she and the people @ her church continue to pray for me! Told her prayer is always welcome! Again, to be continued!

Well hello again! There has been so much happening that I don't know where to begin! The great news was that since the anointing of the oils, I quit having bleeds!

As you know, we recently acquired our baby Brussels Griffon Bella, now 5 months old and weighing in @ 10.2 lbs., almost as much as her 2 year old brother Hanz @ 12.8 lbs! While we make our Colorado trips, we normally leave our Hanz with Marks brother Jim and his wife Shelley out in Rockport, since they live out in the country and have plenty of dogs to keep Hanz company! Unfortunately, we had not had time to introduce our Bella to their female dogs, Emme - a Boston Terrier and aslo Ripley (an Italian greyhound mix?). We weren't sure how they would take to Bella, so I was remembering how one of my childhood girlfriends had said any time I needed anyone to take care of our dogs......? Much as I hated to impose on anyone, I called her up and she said no problem!

I've known Sylvia since we met in Kingsville, TX while we both attended middle school @ the age of 13 and 14 respectively! Sylvia and always kept in touch through the years, and actually, Sylvia lived in Aurora, CO for a few years and we always kept in touch! Right before my procedures started, she married and moved back to Corpus Christi, TX! Sylvia suggested we do a "trial run" introduction with our pets, since she owns a 15 year old Bischon named O'Bear and 2 cats! Sylvia invited us over Friday evening after work so our kids could meet! Couldn't have gone better - everyone seemed to get along! I, like my mother am such a "worrier" that this is the only thing I can think of that may have caused my breakout of hives all over my body the next morning! Like this is the last thing I need before heading out to have a procedure in CO the next day! I was scratching and scratching and asking Mark if we had any Benadryl. He headed out to get get what I needed, I took some about 8:30 a.m., and passed out until 4pm that day! Had to force myself to get out of bed and start preparing all the things our kiddos would need while staying @ Syvia and her husband Randy Wilsons house! Hanz, I knew would not be a happy camper being left behind, but I knew @ least he and Bella would have each other! Sylvia kindly sent us text messages and included photos of the kids every day to keep us updated! Course Hanz was looking all depressed ..., but being such a good Mommy to her own little ball of fur, Sylvia had some tricks up her sleeve - and offered Hanz a little taste of some sausage while she cooked breakfast the next day! Talk about, "you are my new best friend"! Hoping to pop in some photos a little later in this area - don't know how to get them from my phone on to the blog, but maybe Sylvia will!

So, we take off for CO Sunday morning, and since I didn't have any doctor appt. until having to be @ Swedish @ 9:30a.m. Monday morning for my embolization .... we took our time making any decisions on what our next move would be.

Hadn't been to Build a Bear in a while, so checked that out. Nothing I had to have .... went to Wal-mart and got a few things that would make us more comfortable in the hotel and then headed over there to check in! As you know, I sleep with a humidifier mist cup over my trache and I do not travel with the humidifier with me - so I didn't get a good nights sleep feeling anxious about not breathing as well as possible! I could not wait until morning to get to the hospital, so I could get hooked up to a respiratory humidifier to moisten my trache! While I was waiting to get hooked up to my trache tubes and all - my fav. nurse, Rick walked by and did a double take! He says, "Finally, you made it in on a Monday"! I like to fly in to CO on a Wed. morning, see my ENT up there, then check in to Swedish Hospital the next morning and fly home the next. Apparently Rick doesn't work the latter part of the week when I usually arrive! I know he was surprised too, since I had just been there about 4 weeks prior! Well, unfortuntately I told Rick we were there on an emergency basis, since my next routine embolization wasn't due until mid-March!

I get all hooked up to IV's Respiratory mists - and the resp. tech was able to give us some collars and a few other supplies we needed! Everyone @ Swedish is so nice and caring! Dr. Yakes and his two P.A.'s are fabulous, the nurses, even though they don't always get that IV on the first try - OUCH!

It is finally time to be taken into surgery after the Anesthesiologist, Dr. Quinn stops by to see if I have any concerns. Got wheeled over to OR, and got transported from the bed in I was laying on to the one all ready for me in the OR nurse says, "would you like to talk to Dr. Yakes before your surgery"? I'm used to Dr. Yakes pretty much being right there in the next room, so being put on the operating bed and then after a question or two, I am being knocked out! Of course my over-active mind is taking over and I want to ask the anesthesiologist, Dr. Quinn - to please make sure and deflate the little balloon thing hanging @ the end of my trache, otherwise I won't be able to talk after surgery! Talked to Dr. Yakes for a minute and then was given the gas to put me out! In my mind I'm just thinking, "put me under already"!, because I am starting to feel anxious! Everyone is super nice in the OR room, and next thing you know, I'm awake! To be continued, as my meds are kicking in! Nap time! Please stay tuned!

Cyndi

P.S. Almost forgot to tell you about those last two photos! Mark took a picture of me trying to relax and just read my Nook! The other is me with Dr. Yakes two physicians assistants! Dr. Yakes used to have Kelly and Eric as his P.A.'s. Eric left and in comes Mandi (blue blouse)! Then Kelly goes on Maternity Leave and in steps Amanda - not to be confused w/Mandi, and you know how easily confused I get! I'll write back soon!

Wednesday, February 23, 2011

Greetings to all of my family and friends - how are you? Well, things are never boring around here! Right around Mom's birthay, Feb. 7th, I kept having some bleeding from inside my mouth as well as feeling it trickle down down the back of my throat and then out my nostril(s)! One morning about 5:00 a.m. - I sat up and knew I was about to have a bleed. Sure enough, I barely made it to the bathroom to get all of that under control! So after a few days of having a "bleed" once or twice a day, I had asked Celia what she thought about maybe my going back to CO for another procedure, even though I had just come back from having one Jan 19th - 21st! I just didn't know what to do @ this point - should I wait it out and the bleeding will stop on it's own, like it did after my last procedure? I was getting tired of the bleeding @ least twice a day for the last 7 days! I hadn't told Mom because I didn't want to worry her - but we decided I would go earlier than the appt. I had already scheduled for mid-March!

Well, the day arrived for the healing Mass @ Lantana, and turns out the Mass was @ Noon and not 5:30 or 6:00 p.m. like we thought! There was a rosary being finished to we participated in that - we had our Aunt, Sister. Juanita with us, The Fossums, along with our nephew Mark, my husband Mark, the Morins and Celia's friend Patty from choir! Everyone was leaving the chapel, when my brother-in-law Greg spotted a priest that apparently the Fossums and Morins had run into @ the airport on the way to S. Dakota! Greg explained the situation and the priest did the annointing of the sick with the holy oils for me! It was very special! Too be continued.....

Sunday, February 6, 2011

Hi! How is everyone doing? Well, we recently survived our "frozen weekend" here in Corpus Christi, Texas! I was just telling Mom how nothing even "happened" after all the News about our weather, and she says, "what do you mean"? Apparently, since her place has trees right close to the house, she said it sounded like it was hailing all night for them! The trees we have don't touch the house really, so over here @ our place, I felt like I just looked out and saw frost on the lawn and cars! We stayed in for 2 days enjoying our furry kids!I just wanted to add a thing or two of what my daily experiences are having to deal with an avm. Not that I want to sound like all I do is complain, but I do want to tell y'all what I DO go through, and how not necessarily All avm patients experience the same things - each individual has their own circumstances to deal with! You may have heard me mention a fellow avm-er that has her avm in her upper pallet of her mouth and I know she bleeds alot and probably deals with much more than I do! Not to diminish anyone else's situation, but I don't think my avm is as bad as it could be, but certainly worse than others. What made me think of this, was that yesterday (or was it earlier today, all my days run into each other!?) I just did not have the right balance of medication going and was not a happy camper! About 7:00 a.m. I'm trying to remember if my main pain killer, (oxycontin) made it into my mouth @3:30 a.m. I do remember trying to write it down and how I can barely tell what I wrote since I was more asleep than awake! I also remember spilling the entire contents of that bottle on top of me, so I was trying to make sure I gathered each pill - heaven forbid one of my babies eat one! I later found two pills, thinking I had put them all in the bottle! Well, it was 2 hours until time to take my next dose of that pain pill, but I'm starting to feel anxious and am exhausted, but not relaxed enough to close my eyes and sleep! In my mind I kept thinking, "I'm never going to feel well, I'm never going to feel well ..."! I finally told Mark I was taking my pain pill dose early by 2 hours, took my steroid for the swelling and fell asleep with a lifesaver in my mouth - my pain pills dry my mouth out so bad! I could have choked on that! Within an hour I was feeling so much better, yay! I remember asking Julie Labadie, Dr. Yakes Nurse when I first started treatments - "am I going to be in more pain the closer Dr. Yakes gets to my face"? In the very beginning of my treatments, I didn't even take any pain pills! Her answer was, "You may be surprised". Well, my fears were right though - must have pain pills and lots of steroids after an embolization!Mark and I have enjoyed our furry babies so much this weekend! Our favorite thing is to all cuddle in bed and spend quality time playing with Hanz and Bella! They are so cute they take my mind off this horrid avm!Unfortunately, another fun thing I have to deal with, is how much the steroid drys my skin out! My hands are all cracked and bleeding - Mark says he dealt with something similar as a child since he had eczema and still has a flair up once in a while!I started trying to work with my "Therabite" again, to try and get my mouth open a little wider. I can barely get any food in there and the steroids make me so hungry! If you've seen me lately, I'm definitely finding a way to get the food in my mouth, ha, ha!I've recently had some slight paralysis on the left side of my face - didn't realize it until about a month ago when I was in the shower and about to get shampoo in my eyes - I couldn't squeeze my left eye closed! The left side of my mouth doesn't move much and that impairs my speech some, and I've also lost hair on the left side of my head. If you look @ me directly, you can see where the right side of my hair looks thicker! Dr. Yakes physician assistant says once the avm is all gone and treatment has been completed, everything should go back to "normal"! Most cases, the paralysis lasts about 6 months or so.On the brighter side, the weather cleared up enough that the sun was out and we took Hanz and Bella out for a short walk to get some fresh air! I was telling Mom earlier that I don't even "walk" the dogs myself - Mark handles both of them, each on their own leash and I just follow close behind with poop bags and treats! If we keep a decent pace, I can keep up ok! It was good for all of us to get out of the house since we had been closed in for the last 48 hours! Seems lots of the neighbors had the same idea, ran into several people walking their dogs or a couple that was pushing a stroller and had a toddler as well! The little girl stopped to pet our kiddos and was so cute in saying, "it looks to me like you have a little girl dog and a little boy dog, because you have a blue leash and a pink leash"! Mark told her that was very observant on her part! Hanz loves to have people pet him, but Bella is still pretty hyper and jumps about in excitement and that tends to scare the kiddies a little! We have a lady neighbor one block over that has to run out of her house and pet Hanz and Bella if we ever walk by, she really likes them a lot!Oh and for over a week now, I've had a head full of mucus that I can't ever seem to blow all out! I probably should have gotten an over the counter antihisthemene (sp?), but have gone through a couple of z-packs that I suppose have helped some. I have about another week of steroids and I don't know whether that makes me happy or sad. Happy, so there won't be any more "hot flashes" maybe I can relax enough to sleep a bit better. Or sad, since once the steroids are gone, then I sometimes have trouble with swelling again and that means trying to keep the pain under control. Which leads me back to the oxycontin, a narcotic that makes me soooo drowsy, that when I get home from work, I just want to crawl in bed for a couple of hours and often do! I was telling Mom that needing that nap after work, really takes up all my time in the evening - and this isn't a "nap" to catch up on sleep because I stayed up too late - it's my body wanting to shut down from the meds I'm on! Sometimes I sleep past the time to take my next dose, yadda, yadda, yadda ...! Thru all this though, I do know it could be worse and I'm still pretty darned blessed and lucky to have family and friends that care, a loving husband that puts up with me no matter what state of mind/body I'm in and the two cutest dogs in the world to make me laugh and I get to love every day! I'm really gonna try and put some photos in here really soon! Especially because in 2 days it's Mom's birthday! Ok, the gangs all in bed, so I'm heading that way! Thanks for listening!Much love and thanks to everyone! Especially my sister Celia - she was telling me about a healing Mass for me on the 16th I believe @ 6pm @ the church on Lantana! Plus, I was telling her I was almost ready for the next book in a series I'm reading for the second time (Diana GabaldonOutlander Series) and she generously send me a Barnes & Noble gift card on an e-mail to purchase the next book! Yay!Enjoy the rest of your weekend!Cyndi